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There were over 50 persons who wrote in to state that their biopsies were negative after testing positive on blood test.

Many stated that they had their biopsies reread at either Mayo, Dr. Fasano, or at a different pathology facility.  In all these cases they came back positive.  One person wrote:  If pathology slides are not read by pathologists who have
experience with CD, then they are misread at an alarming rate! Furthermore, if not enough biopsies are taken, or not taken from the "distal duodenum/proximal jejunum" they will not be as useful. 

Many stated that since there was already a family history of CD, the doctor's chose to put the patient on a GF diet after a negative biopsy.  All those person's had a remarkable change in their health.

One person wrote in to say their child had a negative biopsy, and was not getting better.  They did genetic testing for CD and it was positive, just as was their blood test.

Many wrote to remind us that if you are on a GF diet already, the biopsy should come back negative.

Many suggested that the "stool test" should be used, especially for children.

94% that wrote in said that they believed that the EGD is too invasive for children.  The other 6% felt that though it is invasive, it is necessary to have as a baseline  since it provides a point of reference.

We thank those who responded to help our member.

Kim Attaway
Central Wyoming Celiac Association
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